Friday, January 27, 2012

“I’m going to be an advocate for melanoma awareness, and try to get people to learn more about the dangers of the sun, and tanning”.

You what?? Never in a hundred years would I have thought that this is where I would be at the age of 52. If I would have heard those words even five years ago, I would have rolled my eyes, and compared that statement to a tree hugger. Not that tree huggers are bad mind you, but I would have been so wrapped up in my own sheltered world, that I couldn’t have imagined the passion required to have those types of goals.

All that changed on September 23, 2010 when Jillian was first diagnosed with Stage IV melanoma. I think we all grew up that day. Me, my four kids, my husband. We have all been faced with a challenge of a lifetime, each in our own way. None of us are the same. But we are all doing well, going about the business of life. And we have the passion.

So I’ve discovered what I’m going to be doing now that I’m all grown up. I will never, ever stop trying to raise melanoma awareness. I will shout Jillian’s story from the roof tops if that is what it takes.

Thank you to everyone whom I’ve met this last year. Thank you for your love, your prayers, your guidance, and your never ending support. Together we WILL make a difference. I know it.

Saturday, January 14, 2012

Do you ever have something on your heart that won't leave you alone? You go about your day to day activities, but that pesky, nagging little thing just keeps popping up? I've had this irritant for over a year now, and it's getting louder and louder, demanding my attention.

Jillian was diagnosed a year ago, this past September, with stage IV melanoma. In October, that same year, Jillian had surgery to remove a tumor, along with half her liver. After a ten day stay at the hospital, Jillian came home to recover. She breezed through it all, with no complications. Soon after, she wanted to see her sister play Powder Puff football at the local high school. We made arrangements to borrow a wheelchair, and off we went. Her oldest brother, Jonathan, pushed the wheelchair, while I winced every time they went over a bump. For me, it was not a fun evening. My athletic daughter was being pushed in a wheelchair in front of a hundred familiar people. I tried to keep my mind on the game, and to watch my youngest daughter, Jennie play, but I may as well have been on another planet. Planet C. A whole other world.

What was intended to be a fun family outing, ended up being very difficult. The White Elephant had arrived. I would see it on their faces. Some people hadn't heard about Jillian's melanoma, others had. Those people greeted us, asked how Jillian was doing, and wished her well. But it really felt as if some of them couldn't wait to hurry off, back to the safety of their own lives. Away from the White Elephant.

We can forward a bit to November, the day after Thanksgiving. Jillian completed her first stereotactic radio surgery where three brain tumors were targeted. Again, she breezed through the treatment, and we settled in to wait the four weeks until her next scans.

By this time I had already started Jillian's care page. It was just so much easier to update the care page, rather than having to answer phone calls and email. There are several nice things about the care page, but one of the things I love is to read the comments. So many posts of love, encouragement, support, and prayer. It felt so good to know so many people were supporting Jillian. And I can see who is following her journey too. I like knowing that all of my family and friends are kept aware of what is going on.

One evening, soon after the football game, I met several friends for dinner. We hadn't been in touch for awhile, and it felt great to connect with them again. Everyone wanted to know the details of Jillian's treatment plan, and her next steps. It was difficult to share everything without feeling that thick lump rise in my throat, and not to have my eyes well up in tears. ARRGGHHHHHH...stop it! I just want to sit here and have dinner, I just want to catch up with each of you. I don't want to be the center of attention. Just tell me about YOUR families, your lives. And so they did, and here comes my rub.

One of my friends had been talking about her daughter, what she was up to, where she was working, how she didn't see her much. How she would go to school, go to work, stop at the tanner, come home and...........................................................

My world stood still. I could hear loud noise all around me, but I couldn't hear any more words. All I could hear was my own inner voice screaming, "What did you just say? Have you been listening at all? Are you kidding me"???????

I cannot get that exchange out of my head. I recently told someone about it and she asked me, "Did you say anything"? And in my shame, I replied, "No". It felt like the White Elephant was in the room that night. I am ashamed of myself. I had an opportunity to raise melanoma awareness, and I blew it.

Well, things have changed for me since that night a year ago. There is no longer a White Elephant in the room. Not in any room I enter. I realized then that if I had a hard time talking about cancer, how must it be for a 21 year old?

I started Jilly's Jem's because I wanted the elephant out of the room. I wanted to make jewelry, raise awareness, and involve Jillian in it. Without shoving it in her face. It's always there, it's a part of our lives now, but good things have happened. I believe that is so important. The good things, and the rich, rich blessings. And I don't even want to say, "in spite of it", I want to say, "Because of it".

I don't know where this road is taking me, but I know it revolves around raising melanoma awareness. I will try not to miss those opportunities like I did before.

Thursday, January 5, 2012

Jillian and I left Tuesday afternoon for her scheduled appointment at U of M. Since her appointments are usually scheduled early in the morning, we head out the day before and spend the night in a hotel. Jillian drove this time since Drew, Jillian's step-dad, and Steve, were going on ahead of us after making a stop in Ohio. This left Jillian and me on our own for the evening (I just hate that alone time ya know).As we are driving down I-94, Jillian said, "I'm tired of this road". Thinking about the potholes and poor road conditions, in my daze I replied, "Yeah, the road needs work".

Jillian looked straight ahead and said, "No, I'm just tired of going down this road." Oh, I could have said a number of things in reply....all the positive, upbeat, inspirational things we hear every day. But sometimes, you just don't need to hear them. Sometimes, your just plain sick of going down this road. Sick of driving to U of M. Sick of Dr. appointments. Sick of the radiation, sick of the infusions, sick of the blood work, sick of the scans. Sick of the hair loss, sick of being tired. Sick of seeing my daughter having to go through this on a daily basis. Sick, Sick, Sick of this road!! And that's okay. It is all okay. So I replied, "Yeah....me too".

We had a nice evening together after manicures, pizza in our room, a movie and a lots of back rubs/leg rubs/foot rubs/hand rubs. In spite of the road that got us here, we can still enjoy those simple moments. Those priceless moments that I will never again take for granted. The time spent with my family has never been sweeter.

Jilly's Jems A Non Profit Organization- Supporting Melanoma Awareness

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About Me

I'm Susan, Jillian's mom. Jillian was diagnosed in September, 2010 with Stage IV Melanoma. I've created this blog in an effort to help raise the awareness for melanoma, especially in young people. This is Jillian's Journey, A Mother's Story.